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None of it fills me with optimism, to be honest!

Would this be necessary? Many of us thankfully don't experience complete collapse on a regular basis, yet we still suffer symptoms debilitating enough to rule out earning a viable income. The demands of daily living are often enough to initiate PEM, and if it is possible to measure the changes...

There's also basic work that as far as I know still hasn't been done on a sizeable cohort yet, which may reveal something worth knowing. Activity levels and patterns, yes; but also changes in blood pressure, temperature, heart rate and variability, breathing rate, urine output and composition...

You can't really know how you'll respond, which makes it difficult. Might it be easier to think about the likelihood of being exposed to 'flu, and what might happen if you did catch it? People who're very young, elderly, or who have some underlying conditions can be really quite vulnerable to...

I have little idea whether the study really means anything, and the limit of my maths capability was reached at long division, but I did like this. :laugh:

These are such important questions, and we can't work out the economic and social impact of ME until we answer sone of them. I'm sure there must be ways to capture meaningful data by asking the right ones. It can't be too difficult to capture nuances such as changes in the nature of work done...

Sounds good, and fingers crossed. Hopefully you'll get to make the most of the van before the mornings get horribly cold! I've still no idea when I'll get my next vaccine—still below state retirement age, so I'll be towards the back of the queue. 'Flu jab next week, though, so at least that...

Yes, those of us who see disappointed people commenting might be able to help, by mentioning that it's normal and it happens in most or all biomedical studies. Not everyone necessarily knows that, and there's no reason they should. Doesn't even need a detailed explanation, as some of them may...

Maybe, but to do that you might need half the amount of funding again to set up a team to resolve all the ethical complications and commission the necessary infrastructure. If they had that money, I'd rather they spent it on more ME research.

Maybe because they're not GPs? Preferably, refer them to someone you wouldn't even find near a GP practice. The mountain rescue service would be ideal, they have those nice dogs. Or the Cones Hotline.

I'd suggest making full use of that, but being cautious about saying you don't have a powerchair because it's a lot of money to pay out for someone who's housebound—an unhelpfully literal council employee may ask why you want a Blue Badge in that case. Put the emphasis on your inability to get...

I hope you get through it okay, @Sarah94. I hate those journeys into the unknown with tests. I haven't considered lethal force (yet), but I have fantasised about having a neon sign on my wheelchair that says Oh Just Sod Off Will You, which lights up when I press a button.

(In case anyone wonders why I didn't include DecodeME or the involvement with the NICE committee as exemplars...I assume we'd all put those at the top of the list anyway!)

I've followed the developments of the Commission on Social Security project for a couple of years, and as they've got a live-streamed event planned, I thought it might be worth posting about it in case others are interested. Their main concern is the development of proposals for a "decent"...

From what I've seen, most people mentioning that they haven't been invited to submit a sample have thyroid disease. Whilst they said it felt frustrating, they generally understood the reasons. Their disappointment seemed mostly to be about the fact that they've wanted to take part in biomedical...

I see that as more important than government programmes anyway. Top-down initiatives are often poorly designed and targeted, and are vulnerable to being dropped as soon as the political wind changes. Real progress is possible when professionals with expertise and/or influence become interested...

It might help if you cleared the cookie that the survey website placed on your computer. You'd lose all your responses, but you might not need a whole new account? You shouldn't need to clear all of your cookies (and therefore sign out of, or not be recognised by, other accounts), just look for...

I loathe the term spoonie, though, and I wish people would stop using it. Apart from infantilising patients, it suggests that people with energy limiting illnesses (a) know how many "spoons" they start the day with, and (b) the quantity diminishes predictably in line with effort expended...

I think it's a carefully placed get-out clause. He knows that at some point, the pathology that causes or perpetuates ME is likely to be unpicked or a reliable biomarker found, and it could come whilst he still has some public profile. "Yes, but I wasn't talking about those patients. They have...

Me too. I actually worked my entire career with ME brain fog, but the severity fluctuated and what you've written is a good description of the times when my function dropped right off. When I also developed B12 deficiency, which added memory loss so bad I sometimes couldn't remember how to...